Energy in Action by MitoAction cover art

All Episodes

Energy in Action by MitoAction — 157 episodes

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Title
1

Why Sleep Matters More Than You Think with Mitochondrial Disease

2

Free Housing for Hospital Visits? The Resource Every Family Should Know

3

Honoring Katie: The Rare Disease Friendships That Change Everything

4

Why Mito Care Is Finally Changing

5

How Mighty Matthew Keeps Moving Forward

6

Supporting Siblings in Rare Disease Families

7

Fighting for Approval and Winning

8

Hope for FAOD Patients Through Research

9

What PFDD Meetings Mean for the Mito Community

10

Creativity and Community: MitoArtisans in Action

11

Inside MitoAction: Support, Advocacy, and a Community That Cares

12

Mindset, Mito, and the Power of Positivity

13

Making Nutrition Work for You: Planning Meals with Mito in Mind

14

Parenting with Mito: Talking About the Tough Stuff

15

How Rory’s Family Built a Life That Works With LCHAD

16

After the Diagnosis: Genetic Counseling & the Mito Journey

17

Hearing Loss, Family, and Hope: A Student’s View on MIDD

18

Dogs for Mito Part 3: Life with a Therapy Dog

19

Married to Mito

20

Raregivers: Turning Caregiver Burnout into Breakthroughs

21

Navigating CPEO: Talia’s Search for Answers, Care, and Community

22

Nutrition Tips for Weak Muscles and Fatigue

23

How Tisento is Advancing Mitochondrial Research

24

The Fight for Educational Rights: What Mito Families Need to Know

25

How to Become Paired with A Service Dog with Rachel Friedman

26

Honoring Sandra Russell Through 15 Years of Derby Day

27

The Lifesaving Bonds Between Service Dogs and Their Mito Warriors

28

Faced with Medical Kidnapping: Skyler’s Story

29

Mitochondrial Shifts: A Conversation with Genetic Counselor Devin Shuman

30

The Superhero Project’s Mission to Empower Kids

31

From Diagnosis to Dalia’s Wish: A Loving Family's Journey with Mito

32

Raising Warriors: A Mother’s Journey with VLCAD

33

From Nurse to Advocate: Tania’s Mito Experience

34

Dateability: A Dating App for the Disability and Chronic Illness Community

35

A Family of Mito Warriors who PUBLISH!

36

Our Space: Building Community for Young Adults with Mitochondrial Disease

37

April - Mito and Social Media Extraordinaire

38

Sharickah - Mito Mom Warrior

39

Daily Living Aids

40

Rare Disease In the Room

41

Rare Sisters

42

Nutritionally Aware - Boosting Energy with the Foods You Eat

43

Being A Mother and Physician and Struggling with Mito

44

The Life and Legacy of Liel

45

Dr. Vockley's Journey in Mitochondrial Disease Care

46

Cegat Genetic Opportunities

47

Chemistry RX

48

Mito Artisans

49

Breathtaking

50

At College with Mitochondrial Disease

51

Mo's Personal Journey

52

Angel Flight New England

53

Medical Marijuana for Mitochindrial Disease

54

Courageous Parents Network

55

Marcy Young - Living with CPEO

56

Self Care for YOU

57

Advocate for YOU

58

The Passionate Life of Josie

59

LHON Collective

60

Mito Quilts of Hope

61

Introducing Positively Walking with Mito Podcast

62

Champs Foundation

63

Employed with Mito Disease

64

Mito Awareness Week and Parent Stories from the FAOD Community - Live from the IMC

65

Barth Syndrome - When the Lack of Fair, Equitable and Appropriate Regulatory Review Process Jeopardizes Ultra-Rare Drug Development

66

Navigating School for Our Kiddos

67

Patient Stories from the FAOD Community - Live from the IMC

68

Hailee The Mito Warrior

69

Jeremiah Gracen TK2D Warrior

70

Akron Children’s Hospital Mito Clinic Research Update

71

Grandparents As Rare - Go Find Your Bike

72

Exercise for Mitochondrial Patients

73

Shades of Grief with Dr. Kendall

74

Travel Tips from the PAR Community with Lisa Weinberger

75

Fighting Chronic Pain with the Neubie

76

Minds in Motion

77

Akron Children’s Hospital - Meet the Mito Clinic Team

78

A Painful Identity

79

Jireh Somera - Fabry Fighter

80

Monica and John Cline - Forever Gift of Compassion - Live Like JoJo

81

Rare Revolution

82

Dr. Neena Nizar - Share Your #RareDiseaseTruth & Give Love A Chance

83

Dalia’s Wish Makes Dreams Come True for the Del Forno Family

84

Exploring Palliative Care

85

Challenging the Status Quo - Robin Powers

86

The Navigation Project

87

Good Grief and the Holidays

88

Meeting My MELAS Mito Friend - Elizabeth Wood

89

Episode 069 - Give Kids the World with Justin Kiser

90

Special Episode - Live from the 2022 Global Genes Rare Patient Advocacy Summit with Tim McLerran, Head of Product, Medical Intelligence One, Inc

91

What Is It Like Being a Research Patient with UDN - Ted Will Tell You

92

Alex the Great and LCHAD

93

Tara Zier - Stiff Person Syndrome Research Foundation and Finding Your Purpose

94

Lovevery - Purposeful Play Customized for all Abilities

95

Meet Devin the Genetic Counselor and Mito Patient

96

Mary Morlino - Parenting with Sarcoidosis and Discussing the Global Genes 2022 RARE Patient Advocacy Summit

97

Jacob and CPEO Plus

98

Meet the Bartles

99

Owning My Story

100

Life with Leigh's

101

TJ Strong

102

Chris Freeman - Chronic Pain Dad

103

Top 10 Tips for Empowerment & Being Your Own Advocate

104

Dr. Stephanie Mihalas - Find Your Balance, Find Your Center

105

Advocate Like a Father

106

Finding Help with the Cost of Medications

107

Lisa Weinberger - Be Your Own Advocate, Listen To Your Body, Take Control of Your Health, & Ask Questions

108

You Never Give Up Hope in Life

109

Living Rare - An Adult's Perspective

110

Parenting & Living Life With Chronic Pain - Ross McCreery

111

The Strength of a Mom

112

Parents as Rare - Family Coping, Communication, & Mental Health Resources - Dr. Jennifer Young, Postdoctoral Scholar, Biomedical Ethics - Stanford University

113

Live Life, Dream Big, Be Positive

114

Removing Barriers in Ultra-Rare

115

Parents as Rare - Cowden Syndrome and Male Mental Health - David Ross

116

Empowering Parents Nationwide

117

EveryLife Foundation Newborn Screening

118

Silver Linings with Sarah Kate

119

Chronically Simple and Simply Unbreakable - Kristy Dickinson

120

Patient Led Trials

121

The Patient Teacher Program

122

Parents As Rare - Parenting with VCP Disease - Nathan Peck

123

The MitoSantas Program

124

Meet the Mito Girl

125

Parents as Rare - Emma and Spencer - The Heart of Parents As Rare

126

RNE Annual Conference

127

Making Mito Wishes Come True - A Partnership with Give Kids the World Village

128

Trailer - Parents As Rare

129

AllStripes and Cyclerion - Community Collaboration to Push Clinical Trials Forward

130

Fight - Research - Hope - Cure

131

Another Helping

132

Giving You the Power to Take Control of Your Healthcare Journey While Moving Mito Research

133

Having a Voice That Deserves To Be Heard

134

Patients as Partners in Ultragenyx LC-FAOD Research

135

One Step Closer

136

Chronically-Inspired

137

Caregiver Toolboxes...A Lifeline and Support

138

A Mom and Daughter's Journey With Mito

139

Lifeline: It's More Than What You Think

140

It's Probably Genetic

141

Adventure Awaits...A Teen's Inspiring Journey with Mito!

142

The Effects of Having a Diagnosis of TK2

143

Making Your Voice Heard Through Song

144

Clinical Trials and COVID-19

145

Service Dogs...A Man's Best Friend

146

Owning My Story...The DadVocate

147

No One Fights Alone....A Family's Journey with Mito!

148

If You Keep the Patient First, You'll Never Go Wrong

149

Life with Frankie...A Mom's Journey with Mito

150

The Positive Power of Peach…A Young Adults Inspiring Journey.

151

COVID Preparedness and Building Your Flu Box…Tips to Help You Stay Safe

152

MitoSantas – Bringing Smiles to the Faces of Children Affected by Mitochondrial Disease

153

The Light at the End of the Tunnel…A Mom’s Journey with MERRF Syndrome

154

Raising Christopher – A Mom’s Journey with LCHAD

155

Finding My Path – A Young Adult’s Journey To Live Beyond His Diagnosis.

156

Trying Not To Run Out Of Gas - A Young Adult's Journey with LCHAD and How She Continues to March Forward.

157

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